Public Services > Healthcare

Clarification concerns leave Caldicott unsure of care.data timing

Neil Merrett Published 10 February 2015

HSCIC maintains that clarifications to address data guardian's concerns over patient data scheme are largely in place, despite some ongoing challenges

 

National Data Guardian Dame Fiona Caldicott has said no deadline is currently in place to complete a review of measures required to address concerns around NHS England's controversial care.data scheme - leaving a launch date to begin trialling the programme uncertain.

After being appointed by the Department of Health (DH) as the first ever data guardian last year as part of efforts to ensure "extra legislative safeguards" are in place for patient information strategies, Dame Caldicott back in December called for clarification on some 27 questions relating to privacy and the wider scope of care.data.

Implementing the programme has continued to prove controversial, with pressure groups raising concerns over the confidentiality implications of sharing highly personal data concerning medical and mental health histories - leading to the project's launch being delayed from last year.

Under a new implementation plan, NHS England is looking to trial care.data at selected surgeries in the CCG areas of Leeds, Somerset, West Hampshire and Blackburn with Darwen - though information extraction is only to commence with Dame Caldicott's backing.

Speaking to Government Computing today, Caldicott said that no formal timetable had been set by either herself or senior health figures like Tim Kelsey, NHS England's National Director for Patients and Information, for when the clarifications required about the programme will be addressed.

Caldicott noted that the programme's trial launch was therefore dependent on the Independent Information Governance Oversight Panel (IIGOP), which she chairs, receiving sufficient responses from health authorities to ensure the required levels of protection measures and information governance is in place.

"My crystal ball is not really clear. With an election coming, who knows," she said in response to when the information may be received.

Caldicott was speaking in London today at a keynote seminar on data protection and the use of electronic health records in the NHS to discuss the challenges around balancing confidentiality with service innovation.

In order to provide greater clarity for patients on how their data will be shared, she noted that strategies such as the 'accredited safe havens' (ASH) plan have been put forward to create an environment where the rules about the security of extracted data are very clear and very much in place, with all staff bound by tight regulations.

The ASH strategy was first unveiled in a guidance paper released last June. Plans for whether there will be a single ASH or a large number of secure havens around the country expected to be finalised by the DH later this month, added Caldicott.

Also speaking at the event was Eve Roodhouse, programme director for care.data at the Health and Social Care Information Centre (HSCIC), which has responsibility for rolling out the patient record sharing programme in cooperation with NHS England.

Roodhouse spoke on the ongoing work to address concerns raised in a report published by Dame Caldicott and the IIGOP last year over the need to clarify how patients can check their data preferences, as well as how it will be secured and the types of information extracted from medical records.

She claimed that the HSCIC was in a position where are a large number of the concerns by the IIGOP's report raised could now be addressed. However, she noted that there were a couple of issues proving harder to resolve.

"The two I would probably pick out are that we are working with local GP practices to ensure they understand what data is leaving their practice for purposes other than direct care so they can communicate that to their patients," she said, noting this would be important to ensure the public were better informed before deciding to 'opt-out' of the project.

"So the practice does need to know what data is going out of the surgery and where it is going."

Roodhouse said the second key focus area for the HSCIC was in clarifying the types of objections given by patients wishing to opt-out of sharing information through care.data and how best to address them through communications going forward.

Related articles:

HSCIC secure care.data facility to open by March

Caldicott calls for care.data clarification

Caldicott becomes first government health data tsar

Legal reform key to health department patient data drive








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